I am new to this group and look forward to learning from experiences of others.
I was diagnosed with prostate cancer the beginning of this month, and I am exploring non-invasive therapies as I want to avoid chemo, surgery, and most radiation therapies.
Please let me know: [a] the availability of the treatments cited below, and if anyone in this group has had successful results with any of the following:
1. Near infrared Photoimmunotherapy.
2. Light, ultrasound or high-frequency therapies.
3. Local application of an ozone mixture to the prostate.
4. Immunotherapies other than Provenge.
5. Brachytherapy. If so, is it true that the side-effects are minimal?
6. Repurposed/off-label use of old drugs and supplements for complementary prostate cancer support and/or reducing tumorigenesis, angiogenesis, and proliferation of prostate cancer; or, for inhibiting growth factors such as VEGF, TGF, MMP-9, IGF-1, DHT, Glutamine, and interleukins IL-1, IL-6,IL-8 and IL-10.
Also, have you had successes in complement your primary conventional therapy with lifestyle changes (fasting, detox, exercise, HBO, sleep, etc.), diet, herbs and nutraceuticals or supplements?
I know it is a lot, but I (and perhaps others) are looking forward to your replies!
Higsby
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Higsby
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Thanks for reason the point of the aggressiveness of my prostate cancer. So here is my bloody history!
I consider my cancer as a slow growing based on my PSA and other test results since my 3.7 PSA in 2008.
For instance, my PSA was 4.9 in 2009, negative in a 2009 MRI, PSA at 5.2 in 2011, inconclusive AMAS test in 2011, PSA at 10.1 in 2017, dropped to 9.34 then 8.65 in 2017-18 maybe due to nutritional protocol, 62.75 ExoDX score in 2018, PSA at 12.1 in 2018 but 12/2018 MRI found no PC.
PSA dropped to 8.8 in 7/2020 maybe due to nutritional protocol, at 10.8 in 10/2020, at 12.1 in 11/2020 with Gleason 7 (3+4), biopsy found PC in 6 spots in 11/30/2020, confirmed by 12/2020 CT Scan and 12/2020 total Body scan confirmed non-metastasized PC and no bone cancer.
Yes. Details help. Glad you have slow growing indolent variant. There is good reason to keep continue point 6 interventions in your case and monitor PSA and other biomarkers. Best wishes.
Doc,Thanks for the reference. I will follow the 1st recomendations, leaning towards Brachytherapy and continually looking at novel complementary remedies from repurposed drugs, superfoods, and supplements as well as lifestyle changes.
1994 = Discal Hernia that was operated and then became in
2004 = Chronic Acute Lumbagy on Fentanyl 87 mcg/hr patches.
2001 = Chronic Renal Insuffissency Grade 3.
2017 = Pleuresy with a chest tube for 16 days.
2019 = Lymphoma LNH Marginal Zone.
2020-03 = PCa Grade 3 became 4 after VMAT=RT on Planing CT-Scan.
2020-10 = Severed Emphysema Gold Grade 3.
2020-11 = Severed Depression on Sertraline (Zoloft) 100 mg and multiple R/Vs with a specialized psychologist for peoples with multiple cancers and heath problems.
I did a total life change. Vegetarian diet, excersise, yoga, meditation, etc. Plus suppliments, IP6, vitamin D3, selenium + vitamin E, etc. I am still here 28 years later.
As to non invasive treatments, the is a host ADT drugs, casodex, zytiga, xtandi, etc.
Don't shy away from the standard treatments, like radiation.
I do plan, with the advice of my physicians, plan to have a primary conventional therapy, like Near Infrared Immunotherapy [currently in clinical trials] if it is available to me, or Brachytherapy.
Also like yourself, I plan to adopt a complementary total life change. Right now I am looking for the right naturopath or physician to conduct novel blood tests to determine both pro-cancer and anti-cancer metabolic and growth factors; and, my micro-environment as a means of choosing which nutritional and lifestyle approaches to adopt.
If you are interested, I will let you know what we come up with.
Please keep in mind.You can prepare your immune system to be as healthy as possible PRIOR to getting cancer.
You can fight the first discovery of PCa while it is contained in the prostate.
OR you can fight APCa AFTER it has metastasized to your skeleton and some organs.
It takes a different approach to successfully treat any one instance. Standard of care is the first step and you can ADD to that with your MO's knowledge.
Never believe a few annechdotal stories supersede true scientific study.
You are posting on an advanced prostate cancer forum, so I assume you have advanced prostate cancer? i.e., prostate cancer that has metastasized? If so, none of those interventions are appropriate for you, at least not as a monotherapy.
Thanks for your prompt reply. I am happy to say that my prostate cancer has not metastasized.
My approach is not based on a monotherapy, but with the advice of my physicians, using a primary therapy like: [1] "Near infrared Photoimmunotherapy" if it is available through a clinical trial or [2] Brachytherapy. The other therapies I am exploring will be complementary additions to the primary therapy.
I did not know that the forum was restricted to advanced prostate cancer patients - mea culpla.
It may improve your responses if you include the details of your current diagnosis in your profile. It also helps to add which ones you're looking at as complementary.
To answer your comment I was diagnosed with non-metastatic prostate cancer by biopsy (11/2020) and reaffirmed by CT scan (12/2020). My total body scan (12/2020) did not detect the presence of other tumors, such as in the bones. I have had chronic lymphocytic leukemia (CLL) since 2012, and it is being treated by Rituximab with 3-5 cycles every five months.
My husband developed aggressive CLL either late in 2019 or early in 2020, diagnosed last March after having had, in quick succession, "an unknown virus" (not thought to be COVID), pneumonia and systemic staph. He proved to have an almost fatal allergy to bendustamine (rituximab was the other 1/2 of the chemo combo/seemed not to be allergic to rituximab) and labs are not tolerating Calquence after 4 attempts over 2 months' time. We have a feeling that the MO will propose a new treatment tomorrow. He has had prostate cancer since 2003 (finally diagnosed in 2014). No CLL specialist suggested rituximab as a monotherapy. You must be doing pretty well on the rituximab monotherapy to have been on it since 2012. I've read that it's now available by injection instead of by IV, the preference of those who have had the new injection seeming to be in favor of the IV because of the injection site pain. Any advice/info/personal experience re the rituximab as a monotherapy would be most sincerely appreciated. Thank you!
Since 2012 I have been using Rituximab (Rituxan) for CLL, except one time in 2017 and one time in 2018 Bendamustine was added - the first time was OK, but the second time in 2018 I had a lot of side effects and misery. So I went back to Rituxan only.
The negative results I have now are a slightly enlarged spleen (but no symptoms), a few small swollen lymph nodes in the neck and underarms (non-visible) and an elevated WBC count (low 100's) which becomes a signal that I need another treatment. Because my remission is so short (around 5 months).
One "possible" reason that I lasted with a Rituxan monotherapy is that I take a lot of supplements and superfoods, but my protocol is hap-hazard and I am not sure which of the supplements work. For instance:
>I initially paired the Rituxan with Methyl Jasmonate and Beta Glucan.
>I have used some of the usual CLL-support substances, EGCg, tumeric/curcumin, sulforaphane, Vitamin D and C, in a sporadic way, probably not using the correct therapeutic dose.
So, right now I am seeking a wise naturopath with an oncology practice to guide me on the correct complementary foods and supplements for both CLL and prostate cancer which are evidence-based and based on my specific tests results on metabolics, growth factors, and my micro-environment. I will let you and others know what they come up with.
Higsby, I can't thank you enough for your reply. We are seeing my husband's MO and talking with his CLL specialist tomorrow afternoon. He literally burned from the inside out 4 hours after the first half of the 3rd BR cycle. The specialist thinks that the next dose of bendustamine would kill him. Hoping that the labs would hold and eventually improve, the MDs moved him to Calquence (bicalutamide) two months ago. Out of the 120 capsules that he would have needed to take as of today to say that he's being treated on Calquence, his labs have only been able to tolerate 41 capsules. Your post was timely because we see the local MO today. I feel a change in treatment coming, so was really interested in your mention of rituximab monotherapy. My husband's CLL came on very quickly as a result of the radioactive isptopes used in the sensitive scans to locate his PCa biochemical recurrence plus 39 RT. Because you have been so kind to respond, I now have an idea of what to ask. Thank you and bless you! PS Can't help but tell you how much I respect the fact that you know your disease and have an idea of how to help yourself.
In my situation with locally advanced PCa, I chose a combination of conventional treatment (intermittent ADT with IMRT to prostate and pelvic lymph nodes) and a program of 'repurposed/off-label use of old drugs' under the Care Oncology protocol, which might be an option to check into and see if it's right for you: careoncology.com/the-coc-pr...
I also add that there is NO magic pill or cure once your pc has spread, so STOP looking for that which does not exist, instead focus on reading as much as you can about the various options, but as Tal noted, you are still early stage so should focus on that first.
Exercise all possible. As time and SOC treatments evolve fatigue will be the number 1 side effect you will be tasked to endure. Stay ahead of it all possible.Welcome to the group no one wants to join. Look at profiles to learn how many years others have survived ahead of you.
Hi 2dee,I will get back to serious exercise when the gyms reopen safely.
Higsby
Hi Higsby
Perhaps you might consider some complementary supplements that are relatively inexpensive and non toxic.
If you click on my avatar picture you’ll be able to read my bio and some posts I started about my own cancer journey and complementary supplements.
I've been taking Essiac tincture together with CBD oil for almost 4 years.
When I stopped ADT in early 2017 due to severe side effects my oncologist predicted my PSA would keep rising and my mets would continue to spread.
However, almost 4 years later my PSA is virtually the same as when I was diagnosed in December 2016 and my 2020 PSMA PET CT scan showed a reduction in distant metastases compared to my 2016 PSMA PET CT scan.
I'm the first to admit that there's no scientific peer reviewed evidence showing Essiac or CBD oil to be effective, but I've been taking them for almost 4 years and am very happy with my results so far.
Don't fluff around with PCa. By avoiding the treatments that have been proven to have significant benifits gives this cancer the opportunity to take more of your realestate. APCa means the cancer has left the prostate and is looking for greener pastures. For me, it was my pelvis and bladder. If it does take hold, you may well become a fully fledged member of this APCa fraternity. My advice is to you is to harden 💪 the fluff up and take the fight to this demon 😈, DD.
I like to think outside the box and have tried a lot of things that I considered to be non-invasive. I tried magnetic therapy and still do apply it from time to time to control PC metastasis. It actually did lower my PSA temporarily, which gave me a bit of confidence. Also heat therapy seemed to help during same period so I don't know exactly which was successful. You didn't ask about them specifically so I won't dwell on them. I also have tried high lycopene diet for years and it seems to help. Nothing I have tried outside of normal adt seems to work without question, but just to be general, all cancer cells die above 106 degrees F, south magnetic poles kill cancer cells, and lycopenes interfere with prostate cancer (among other cancer cells) reproduction, slowing them down, by recruiting t-cells.
All of us on this forum have advanced prostate cancer that is unfortunately not curable I’m the vast majority of us. So many here use complementary modalities to try and augment our standard proven treatments to try and support our survival as best we can. You are not in that category. You have localized indolent prostate cancer that is at this point likely curable by primary treatment with either radiation or surgery. The only thing on your list that would actually work is the brachytherapy. And that requires a radiation oncologist that is very skilled and experienced with it. Do whatever supportive modalities you may choose. But do not pass up the opportunity to actually be free of it by failing to go for a curative treatment with a high probability of success. Good luck.
Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!
All info is voluntary, but it helps us help you and helps us too. If you do respond, copy and paste it in your home page for your use and for other members’ reference.
IN fact, only a few use complementary medicine-or whatever you call shoving mountains of unproven, unknown and lacking in scientific proof as to effectiveness to ward off PC.
THERE IS NOT ONE, nor the entire kitchen sink full of these various compounds etc. that will CURE OR STOP the advancement of prostate cancer, NONE.
Keep to the scientifically proven treatments if you want to stay alive longer!!-and save yourself a lot of money that just gets pissed down the drain, or worse, causes you side effects that could cost you your life.
I understand your concern and your passionate advice.
However, I am reluctant to use so-called complementary remedies as my primary treatment. In the next two to three weeks I am likely to agree to use brachytherapy unless my urologist or oncologist/hematologist convince me otherwise - such as a remedy just completing a very successful set of clinical trials or if they articulate major concerns with brachytherapy for my situation.
Nevertheless, if you follow the science, these "alternative" approaches have not have "cured" many people, but clearly have merit in slowing the growth of cancers, including prostate. I am very sensitive to any remedy that cost a lot of out-of-pocket money as I have two types of health insurance and I don't want to go broke. Also, in one of my 'prior lives' I did work for one of the 'Big Pharma' firms so I think I have a balance view or natural vs. drug remedies.
My personal search for possible complementary remedies is largely through peer reviewed journals, publications from major cancer centers, and a lot of publications from the U.S. National Institutes of Health (NIH), particularly their National Center for Biotechnic Information. I am most interested in papers that cite evidence-based research studies, particularly in vivo studies or clinical trials using human subjects.
I see your advice as from someone who knows of persons who have been burnt by blindly following some magic cure or following some articulate svengali who can put on a white coat or a robe.
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